First post - advice wanted please

[MJK]

Hi,

This is my first post and is probably going to be very long and rambling (sorry about this). I am trying to get everything clear in my head as I type but I’m a bit of a butterfly brain so it may jump about a bit.

My dad has AD which (I believe) was diagnosed nearly two years ago, though his memory had been getting noticeably worse for at least a year before that. I am unaware what, if any, medical help he is being given, though I know he is taking no drugs for the AD. He does see his gp pretty often for other things though. My mother is also very confused, though I think this has a lot to do with worrying over my dad, so it is impossible to get any factual information about his condition or what professionals have said. Her stories change and are sometimes definitely untrue. I live over 200 miles away so don’t see them too often.

They came to visit this week and he was noticeably worse. For example, not remembering that my Mum lives with him, constantly checking his watch, fretting over a meal not being instantly available, not knowing where he is and wanting to go home to bed. Lots of other things as well, in general he is very, very vague and confused.

I have various worries about them; my first concern at the moment is about him still driving. My mother insists he is still safe, though I don’t think she is a reliable judge. I haven’t been in a car with him driving for a couple of years but even then I remember him making mistakes like not giving way when he should. I know he has started getting lost on various journeys, including one or two he has done regularly, and forgets simple things like how to use the wipers or the lights. At least three times recently the car has received minor bumps (my Mum says caused by other people in car parks, I KNOW in at least one case this is untrue). What can I do to make sure he is safe to drive? I don’t think he should, but surely there is some sort of official assessment that could be made whether by his gp, or someone else. How can I do something about this (and I really would prefer that my parents didn’t know I was behind it – cowardly I know).

My second major concern is for my mother. She seems finally to be accepting the diagnosis, and is in tears a lot of the time (her mother had AD for 10 years so she does understand how it progresses). I think she needs to start looking after herself more, and to start getting out and doing more things independently. However she has always built her life round my Dad and done everything for him. She constantly tries to cover up his condition even to family. Apart from occasions when she breaks down completely I don’t believe she confides in anyone. We have never been the sort of family who “talks” about things, and I find it virtually impossible to start now, we’ve just never had that sort of relationship. She isn’t coping well, and is very confused herself. When they came to visit (by train) they arrived a day early (very typical), so there was no-one to meet them at the station. She didn’t phone anyone, or seemingly ask for any help at the station. I finally received an anserphone message from someone at the station (presumably a good Samaritan who had seen her crying), and then I went to collect them. She insisted they hadn’t spoken to anyone and couldn’t understand how we had just ‘appeared’. She is a bag of nerves and doesn’t remember major things. This isn’t the first time something like this has happened, we once had to report them missing to the police.

Basically, I think I am asking, what sort of practical/emotional help can she get? No family live particularly close and she doesn’t seem to be asking for any help so far, but obviously isn’t coping well.

I am sure that there lots more things I will think of as soon as I post this, but some pointers to get me started would be great.

Sorry I’ve gone a bit ( I could probably ramble on a lot longer if I thought some more!!). Thanks anyway for taking the time to read this.

 

[Brucie]

Hi

I can only make a short first reply as I have to go out in the next 5 minutes.

Driving - in his condition he should almost certainly not be driving. I doubt whether his insurance will be valid, and he could cause serious damage to himself, your Mum and someone else.

If you are the person that sets in motion whatever is necessary that stops him driving, be prepared for flak from him and your Mum. But it will be for their own good.

I suggest you contact his GP if you know their name and ask them to treat this as URGENT.

I'll return to your post later.

Best of luck; Others will no doubt also respond. This is a very difficult time for you all.

Best wishes

 

[Jude]

Dear MJK,

Welcome to TP. First of all have a look at our Initial Care Pack for Carers and some fact sheets which will help.

My initial opinion is that you will need to have BOTH your parents checked over by their local GP with either yourself or a reliable person in attendance to report on the situation - as soon as you can.

From what you say in your post about your parents getting lost together and not thinking to phone in advance, does rather make me feel that they MAY both be displaying early onset symptoms of AD. I really hope I am wrong and your mother is only just upset and confused with caring for your father. If it later transpires that they are both this way, then I'll be able to provide plenty of backup as I'm looking after two parents with AD, which is pretty rare. There are some positive benefits actually.......

Anyway whatever - it's time to act. You need to speak to the GP, who will put you in contact with a Consultant Psychiatrist who will counsel your father against driving. You also need to write to the DVLA and have his license cancelled. I had to do this behind my father's back and it was pretty awful, but absolutely necessary before he either killed himself or somebody else. The 'bumps' in the car park are totally familiar. Not giving way at intersections, stopping on roundabouts, etc. It was all pretty horrific.

My parents were very similar in not discussing problems. They refused to acknowledge that anything was wrong. They were also incredibly good at 'masking' their problems so that others were not really aware of the major problems. All the food in the cupboards was way past its use-by date and they were not eating properly and doing some very dangerous things such as leaving the hotplates on, taps running, getting lost, losing handbags and wallets, inviting strangers into the house, etc.

First port of call is to the GP. Do keep in touch.

Best wishes,

Jude

 

[MJK]

Dear Brucie and Jude,

Thank-you both very much for your replies. You make me more convinced that I have to do something about my dad's driving (and possible my mum's).

I think I am going to try contacting their gp. I know this is a stupid question, but will the gp talk to me at all on my own? I know he has to respect their confidentiality, but do you think I would be able to get an appointment to tell him my concerns? (I have never had to do anything like this before). It is also made harder by me being so far away.

Jude, what you say about my mum possibly having AD is no surprise. She has been 'scatty' for a long time, but now forgets quite serious things. She is definitely having problems with her memory/concentration but it is hard to tell whether this is because she is so stressed about my dad. She is a bag of nerves and tries to deal with everytihg herself, which I am sure is making things worse.

Thanks again for your kind replies. I will talk to my brothers over the weekend, and hopefully if we all agree will try to get in touch with the gp next week.

 

[Katy44]

MJK - From what I've heard, depression and stress can cause a lot of dementia like symptoms, so it may be that your mum improves once the situation improves. I really hope this is the case, and I'm thinking of you.

 

[Katy44]

As far as talking to the GP goes, my Mum and my Aunt have been in exactly that situation with my Grandma - they tried to talk to her GP, but he refused to tell them anything or take any action at all without her agreement. However, he said he would have taken more steps if my Grandad had been there (as her carer / next-of-kin). I don't know whether you would be able to convince your Mum at least to come and explain the situation to his GP?

 

[Jude]

Dear MJK,

Firstly, if your father has been visiting his GP regularly, then the Doctor will surely be already aware of the problems. Whilst he may not be in a position to initially breach their confidentiality, then I am sure that a phone call from you will certainly help clarify matters to the point where you will be able to assume responsibility fairly soon. A letter from yourself and brothers may help too, but one of you does need to be present at the consultation.

I didn't have any problems with the GP, since he was our family doctor and knew me already. I spoke to him to begin with and then took my father for a consultation, where it was pretty apparent that things were seriously wrong. My father had actually spoken to the GP about his memory loss beforehand, but the GP was waiting to speak to me before he could proceed. He made calls to the Cons Psych immediately and my father was off the road within a fortnight.

It was only a fortnight or so later that I felt that my mother needed a check up, as she was getting very 'scatty'. We had previously been concentrating on my father and his driving and just assumed that mother was elderly and anxious. They both had to have MRI scans which were very stressful [especially for my mother] but AD was diagnosed in both cases. My father started taking Aricept which helped within 14 days. My mother had a very bad reaction to it and has only recently been able to begin taking Ebixa, a new drug which has helped enormously.

Hopefully you will be able to get something happening early next week.

Best wishes,

Jude

 

[storm]

Dear MJK, I agree totally with the others you must get in touch with your parents GP, i kow it will be hard for you but i really would talk to gp first i am sure he will listen to your concerns then get either yourself or another member of the family to take your parents to see the gp, i know that this is going to be hard for you i have been through it myself but i just had to put my foot down and duck when the angry attacks followed. My mum fooled us all for a good few years until we finally realised what was happening, they can be so clever at masking things its quite sad because it makes you realise how frightened they must be about all the strange things happening to them.Its a long road you are all starting but remember you will always have friends here who understand and will offer help and support. Hope you get things rolling and dont worry i am sure you will feel better when you know exactly what you are dealing with.storm

 

[Kriss]

Dear MJK

please ring your parents GP urgently. I contacted my Aunts doctor and opened the conversation with "I know you may not be able to discuss her with me but I needed to make you aware of our worries. You may then be able to assess her in a different light whenever you next get her in the surgery..." He was very understanding even though he said he was powerless to act unless she asked - I remain totally mystified by this attitude but sadly it runs through the entire system as no doubt you are about to discover. Once you have a contact willing to listen or talk keep them informed and updated - Aunties consultant was a firm supporter of e-mails and it meant I could get him up to date info just prior to an appointment. This avoided him having to ask me any difficult questions in front of her.

I went on to list all of the symptoms that had been noticed by us and her neighbours and friends - I was able to back up these with previous experience of my Dads decline in his mental health prior to his death 12 months earlier.

As she progressed I made another call on similar lines and he told me that she had not been in to see anyone for at least 5 months and was yet to collect a prescription from that visit.

The driving was the catalyst for action. Thankfully no-one came to any harm but in a short space of time there was evidence of several minor bumps and followed by admission to hospital having pulled over on the side of the road and not being able to communicate with passers by an ambulance was summoned. It appears that she had been seen to go through 2 red lights just prior to this. I'll let your imagination do some work here...

She discharged herself within 18 hours (we did quite well to keep her there that long) but we then had sufficient ammunition to confront her - with a few tears from me - and started on the long road of deception (this will also become a common occurence to you I'm sorry to say) telling her that she would have to be cleared by the doctor in order to get her licence back. We were supported by the local police officers who having returned her car had kept her keys, requiring a personal visit with insurance docs etc before they would give them back.

The GP backed all of this up with firm instructions that she did not drive until she had had further investigations into her state of health. We were in no position to forcibly remove her keys from her but the police were wonderful. They suggested we remove the rotor arm to prevent her from driving should she "forget". We never got as far as ringing DVLC direct as her problems escalated over a very short period.

I would suggest you ring 1) the GP and 2) the local police station (ask to be put through to the locals not the call centre). Unfortunately the onus is on the "driver" to report any health problem to DVLC that they may have which in these circumstances is totally ludicrous. I am sure they will treat any call you make confidentially. I'd put them at no 3 on the list.

Good luck, let us know how you get on and if we can suggest anything that may be useful we will try.

Kriss

 

[Brucie]

Hi its me again with another shortie

Please be aware that one of the ways of coping with a partner who has dementia is to try to reduce one's level to theirs, as close as possible. They get mad as hell if they think you are trying to be brighter than they can be. So eventually you start yourself to wonder if you have the same thing.

Also, if you are very close, it happens because you want to be able to share everything with them, even the bl**dy dementia.

This happened to me and I've had great trouble in speeding up again. Long term care sort of slows you down!

 

[Norman]

Hi mok
welcome to the tp site.
I think most GPs would talk to you with the questions put in a diplomatic manner.
Could you take them for their 'flu injections?If that were possible that would a good lead in to the GP.
I think you have enough advice for now but please do something about the driving for your parents safety
Regards
Norman

 

[Jude]

Dear All,

Why is there this attitude of 'we can't help unless the person afflicted ASKS for help?'. Given that most AD sufferers spend huge amounts of energy masking the problem and refusing to believe that there is anything wrong, they are hardly going to admit it - are they???

Jude

 

[barraf]

Dear MJK

Our GP was quite understanding when I suspected Margaret was suffering from some form of dementia.

I know I keep pushing on the subject of writing things down but that is what I did on that occasion too.

After he had read my epistle he said "it certainly sounds as if there may be dementia, bring her in to see me." "Tell her I want to check her blood pressure."

That got us started on the road to diagnosis.

So certainly go and see the GP and arm yourself with as much anecdotal evidence as you can collect.

Cheers Barraf